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I think not!

So I telephoned Biogen to try to find out if the experimental compound BIIC33 ( <shortened url> ) is thought to have the potential to repair only white matter (myelin) as suggested by recent reports or grey matter also (the nerve cells themselves) as reported in older reports.

I couldn't email because I could find no email address on their site. I telephoned their press officer who immediately cut me off mid sentence and gave me the number of a Biogen patient advice line. A polite gentlemen listened to my enquiry from beginning to end but admitted that he had no idea whatsoever as to the answer. He gave me another number. I spoke to a lady who gave me another number but when I telephoned it I got through to the press office (again). So I telephoned the second lady (again) and explained my question (again) and she asked me to write this down in an email.

So I write an email the following day. Two days later I receive an email asking me if I am a journalist, doctor or patient. I next receive this reply,

Thank you for your patience. Neither Biogen Idec or anyone in our MS Service line team will be able to honor your inquirty. You must ask your treating physcian regarding questions such as this.

I get the feeling she didn't to read about BIIC33 at all, and I explain in my next email

How on earth could my Doctor answer this question?? Biogen Idec are conducting the research?!

Perhaps you could tell me who in your corporation I could contact?

To which I'm told,

Our MS service team is not able to answer to a therapeutic hypothesis of a non-approved MS drug. Thank you for your understanding.

And then I reply saying that it means a lot to me and ask if there's anyone else I can contact and offer to provide the names of the researchers.

I receive no reply. And that was eleven days ago.

They were completely unhelpful, I should imagine that the researchers would be delighted to spread news on what it is that they're doing and I can't see this being a trade secret since I was only asking, essentially if they could confirm the facts in older reports. What would stop them from sending an email to the researchers? I'm on Rituximab so I am a customer after all.

It would be very vindictive of me to wish CCSVI fulfils its promise and puts them out of profit and forces one or two staff cuts. So I won't. They'd be more than happy to talk about drugs which promote axonal repair in that eventuality, I'm sure.

Am I being unfair in thinking that they don't really care?

Am I being unfair in thinking that they don't really care?

One of the first points you have to understand about Biogen is that they are a pharmaceutical business whose sole mission is to make money...as much of it as they can. That's what they are in business for.

Any research projects they are conducting would be very secretive and they will only tell the public what they want the public to know. Anyone else who may be looking for information on this line of research will likely be viewed as suspicious, even a competitor trying to determine where Biogen may be in working with this potential drug. So they won't give you or anyone else information about what they are actually doing at the moment.

Whether one can translate this into Biogen not caring about MS patients or not is a long shot but that's the way big pharma operates. If this drug becomes successful, they want to ensure they make as much money as possible from its sale.

Harry

HarryZ wrote:

Any research projects they are conducting would be very secretive and they will only tell the public what they want the public to know. Anyone else who may be looking for information on this line of research will likely be viewed as suspicious, even a competitor trying to determine where Biogen may be in working with this potential drug. So they won't give you or anyone else information about what they are actually doing at the moment.

But I wasn't trying to get them to reveal anything new. I just wanted them to confirm the conflicting lines of two press releases, one a couple of months old and one a couple of years old, but I see your point.

Terrible though isn't it? If the research model were different and efforts were pooled we might well all be cured by now.

But I think your right, they must be paranoid. If it wasn't for the vague promise of BIIC33 repairing me I'd hope that, in time, CCSVI sinks them.

Sorry, L. Marc (wheelchairkamikazee) has a terrific blog this week on this very subject- you are not alone.
http://www.wheelchairkamikaze.com/
cheer

Terrible though isn't it? If the research model were different and efforts were pooled we might well all be cured by now.

If the vast majority of MS research had been pooled over the past 30 years, we would likely have viable treatments for this lousy disease today. But just the opposite has happened and it's big pharma who controls the research.

What have they produced? Long term and very expensive use drugs which alter one's immune system to try and help a disease that they can't even prove as being auto-immune!! Look at the CRAB drugs...been out for almost 20 years now and they become more expensive as opposed to the opposite happening. And we all know the cost of Tysabri.

Nope, MS medications are a big business and will continue that way for some time to come. And it's very competitive and secretive as you have discovered.

Harry